Scheduled for a skin biopsy on 7/26. Just wondering what to expect during the procedure and what happens afterwards. Can anyone share their experiences? Thanks

--is, fortunately, one of the most benign procedures you'll probably ever experience.

At each location from which a sample is to be taken, you will be given a shot of a local anesthetic, such as xylocaine--which will probably be the only discomfort you will experience (it sometimes burns a bit going in). Then, after a few minutes to give that time to numb the areas, small, 3mm diameter circles of skin will be carved out (usually to a depth of 1 mm) of each. Normally, samples are taken at the ankle and thigh, and sometimes the lower and upper arms (this is to check for the nerve fiber "length-dependency" of many suspected neuropathies).

You will bleed a little from each sample, but since the smaples are small this will stop quickly with some pressure and gauze. Normally, a band-aid on each spot is all that is needed--the samples are too small to require stitches. You'll probably be given instructions to keep the bandages on for a while and some care instructions that may include a topical admnistration of local antibiotic ointment once they come off, just as precuation.

It normally takes a while before you get results; what is looked for is intraepidermal nerve fiber density and the condition of those nerves (compared with "normal" controls). Significantly reduced density, or abnormal swelling/branching of fibers, often points to a small-fiber neuropathy, though cause is rarely revealed by skin biopsy.

I've had this done four times--I'm followed for research purposes--and my skin biopsies (after the first one, which showed major reduction in density and abnormal branching/swelling) have shown slow re-enervation over the years. The procedure is so ho-hum I'd let them do it every month if they felt it necessary.

I thought it was a simple procedure compared to everything else! Very easy. I am glad you are getting it.

Glenn, I have only had it once. I would love to get it again and also have proximal sites done. I want to see how things are affected proximally. I wonder if my deltoid sample would show the 'fibro' type pattern.

glenntaj,
What are you doing to cause the re-enervation (healing).

FYI--When I went to Mayo Clinic in Rochester in 2007 they told me that they normally don't do the skin biopsy anymore because they can obtain the same info from other tests that indicate small fiber neuropathy. I believe this would be the vibration, cold sensation, and heat-pain sensation. My cold and heat-pain were abnormal so they concluded probably small fiber neuropathy.
Electron

--has never been a fan of skin biopsy--I suspect it's at least partly becasue they didn't come up with it or play a big role in its development. (Mayo tends to be very competitive with Hopkins, Cleveland Clinic, Columbia Presbyterian, etc., and skin biopsy was developed at Hopkins with assistance from Columbia and Mass General).

There are other tests, as you've mentioned, that can reveal small-fiber neuropathy, but the skin biopsy has come to be the current "gold standard" as presence of reduced intraepidermal nerve fiber density rather definitively points to neuropathy. The other tests rely more on patient self-reporting, and while sensitive are not as specific--abnormal results on many of them can be from small-fiber neuropathy but also from other syndromes.

As far as what I'm doing to get re-enervation--supplements, exercise, and time. Nerve fibers can regenerate given the proper conditions, especially when the neuropathy is acute onset, as mine was. No cause has ever been found for mine, though an autoimmune molecular mimicry process is suspected. In many such acute neuropathies, the process is monophasic--the theory is that once the immune system wipes out all the targets, the process stops. Still, that's no to say I'm asymptomatic (though better than at the height of this in 2003)--I'm still prone to "flares" and the regrwoth of nerve fibers in new patterns means I'm prone to parastheses and other weird symptoms by any number of compressive forces--even muscle-building from weightlifting!

I'm not sure, but I don't think that Mayo does the testing for the skin biopsies anymore. They don't do it in their labs, I mean.
From many posts I've read over the last 12 or so years, Mayo is on the list of the good places to go for PN evaluation & testing, but...... it seems to be on the bottom of the list. Preferences for other centers seem to be higher and experiences at Mayo seem to be left wanting, in many posts.
Cornell-Weill, Cleveland Clinic, Johns Hopkins, Jack miller Center to name a few, seem to get a higher experience and test rating than Mayo.

Cleveland Clinic seems to be a good place to go for folks like us. I researched their physicians and found one that is a neurologist and a specialist in neuromuscular disorders. He actually specializes in autoimmune/ inflammatory polyneuropathies so hopefully I am in good hands. My neuro at IU wouldn't even consider a skin biopsy, this doc at CC actually suggested it. The problem is that I am a "get er done" kind of person and waiting 6 weeks for appointments is driving me nuts!!

One of the neurologists I saw dissuaded me from getting this because he said it wouldn't tell us what the cause is and wouldn't affect my treatment. It made sense to me at the time. I'm confused now...what is the point to doing it?

From reading posts, I am NOT that impressed with Mayo. I do know of one center not far from Mayo from those in the Midwest, Great Lakes area that does do skin biopsy and also has an autonomic center. I have gotten care there for 6 years and am pretty satisfied. If any one needs a center in the western Great Lakes area, you can PM me.

The point of doing it for many people seems to be for confirmation that they have small fiber neuropathy. Many people with small fiber neuropathy have been told by doctors along the way that it is all in their head or from stress. Also people may need the confirmation of the small fiber neuropathy for use in disability cases, ssdi or ltd. You can also keep track over time with additional biopsies as to the direction you are going. getting better or getting worse or staying the same. It would seem to be useful for peace of mind as to finally know what is going on with yourself.